squirrel!

Big Week: Cataplexy That Lands Me In Er And No Rem On Mslt, What Now?

31 posts in this topic

Hi guys...

 

  If you have been following my story, this is quite an update... First a little background, I am 31 years old, 5'8, 140 lbs. I've been dealing with EDS for years and diagnosed with ADD, hypoglycemia,muscle weakness etc. throughout the years.I finally got a sleep study for possible UARS and it showed no RERA's, but multiple arrousals, etc and so a repeat Poly and MSLT was done. My Dr was very convinced I fit the criteria for Narcolepsy the more we talked. I even started to recall possible cataplexy episodes and was almost "looking forward" to sharing my thoughts with her at my follow up appt. I felt like the pieces were finally coming together and there was FINALLY an answer for me.

 

My apt is next week, and as of yesterday, I had still not heard my results. Then, yesterday morning, I ended up in a cataplexy/seizure attack that left me unable to talk, walk, move muscles, etc. I could hear everything around me and terrified myself and my poor 4 year old who had to watch. This all happened in a Target parking lot. It had never happened this severe before.

 

When I finally was able to talk ( about 30 minutes) I was telling the ER dr about my possible NwC diagnosis. He called to see if he could speed up getting my results back. They were faxed over. Guess what it showed? Not only did I not reach REM, but my latency was 10 minutes?! seriously? How is that even possible? To say that I am discouraged, frustrated, even embarrassed.. is an understatement. How is this possible?  How should I proceed? On one hand I KNOW there is something wrong. I am a very stable, healthy person. I have had so many others tests to rule out these symptoms and it all comes back to narcolepsy. I feel like I should continue to fight this and see what happened at the sleep study, if anything for the safety of my kids since that attack.

But on the other hand, I feel very defeated.. maybe I should just give up, take my Adderall and move on- without a diagnosis?

 

My follow up with sleep Dr is next week. For now, I'm stuck.

 

Thanks for any advice/thoughts...

 

 

Share this post


Link to post
Share on other sites

Ok- something is certainly going on for you. But what?

I have cataplexy and the longest a full collapse has lasted was 2 minutes of complete paralysis. My speech has returned before my legs.

If you think this is cataplexy, could you give more detail about the event. Was it preceded by an emotion or a scare? How did you end up in the ER? What was your body doing - did you fall, sit, stumble. I just want to be able to picture the event and I don't have enough information.

I think it will be helpful for you to focus on symptoms rather than a diagnosis. If your latency was 10 minutes that still means you are a sleepy person- but N is more pronounced. I did not want to be diagnosed with N and tried to keep myself awake during my first MSLT and still fell asleep in 3-5 minutes.

Have you had an MRI or CT. There are other things that overlap with N symptoms. You need answers. Peruse the symptoms rather than a diagnosis. The symptoms will lead you to the answer.

Were you off your stimulant prior to the tests? And other medications?

Share this post


Link to post
Share on other sites

Hi hank,

Thanks for responding. I was off all meds for 2 weeks. Prior to that I have had EMG, Cat scan, MRI, EMG ( leg weakness) lots of blood work, etc.

The "episode" happened at target. My legs have been weak off and on for a few days and I was very tired. Not much more than normal though. I decided to leave Target and I got to the car and was very sleepy, my limbs were heavy, I managed to quickly call my husband but couldn't end the call, my fingers and hands wouldn't move.the phone fell down to the floorboard. My head fell over sideways and my eyes were closed. I could hear everything... The radio, the people in the parking lot, etc. it was very scary. I wanted to move but I couldn't. Finally my husband arrived and carried me to the passenger seat and took me to ER. I could hear everything, all the questions being asked, the beeping of machines, etc. They ran lots of tests and slowly I started being able to move and speak. First I could move my hands, then face slightly, then my feet took the longest.

It took about 45 from beginning to end. ( Of the episode) I was discharged from the hospital when tests came back normal. Recommended an EEGfor follow up, although seizure was not suspected.

Today I went without meds to just rest. I have been sleeping on and off all day. I wish I knew where to go from here!

(I also like our comment to focus on symptoms rather than diagnosis. I need to remember that.)

Thanks for your advice!

Share this post


Link to post
Share on other sites

Hmm.  I must ask, when you left Target, did anything occur in the parking lot or did you walk out with some sort of anxiety/stress/anticipation; was anything rushing through your mind?

I ask because it doesn't sound as if there was a trigger.  With Cataplexy, there's an emotion interaction/activity/stimuli, triggering it; and it happens quick.  There is a other variation which I believe is related to withdrawal from antidepressants, this is a more subtle or severe muscle weakness to complete temporary paralysis (like Cataplexy) yet it is prolonged and without the trigger; this is named 'status cataplecticus".  

 

I can relate with your medical realm experience.  As, I went through ringers getting 'confirmations' which was all I was after.  I'd been collapsing, when I'd laugh, or be asked for change, or hand a plate of food I'd cooked off and be returned with a smile or compliment; the Cataplexy would trigger and I'd near immediately be on the floor or frozen and weakening, to me it feels very much like a flickering of the muscles or a short in my muscle wiring.  The Cataplexy for me last only a brief period of time, 5-20 seconds; if I resist it is much worse, and the longest I've been down was maybe 30-40 seconds.

My MSLT was hard to get to, because I have 'Idiopathic Central Sleep Apnea' which opened a, deep hole, door.  However, I finally went to Mayo Clinic and got my confirmations.  My Sleep Latency was 9 minutes (a door was opened early on, like 5 minutes, into a nap which they said did effect the overall mean) and I got a 'Probable Narcolepsy with Cataplexy' diagnosis and they said 'you're definitely experiencing Cataplexy' after the sleep specialist said I looked happy to have my coffee (on the 11th day of not having had any) the day after the MSLT, I awkwardly handed him the cup as/before collapsing..

 

Hang in there, be careful and try not to get too discouraged. 

Hank is correct, focus on yourself and not the opinions as much, you will find that you may learn and know more (on certain things/aspects) than those that you deal with...

This is the right place to be, for sure.

Share this post


Link to post
Share on other sites

Thank you so much for the response.

For me, there was no trigger, unless you count extreme fatigue.. I was anxious to get home to check about my test results, but I don't know if that's it.

I guess I'll follow up with my sleep dr from here and see what se says. I just wish it was more cut and dry.

Also, I'm sorry you had to go brought what you did, but I'm happy you've gotten to a place you feel better about. :)

Thanks again.

Share this post


Link to post
Share on other sites

What you experienced does not seem consistent with cataplexy. The length of time seems to point to something else, along with the warning time. The last time I had a full collapse, I was able to say "I'll be ok" and was down for 2 minutes. Then I was back up and walking after it passed. I could not have made a phone call.

This weakness in your legs- is that something that lasts a while. I am curious about that.

Share this post


Link to post
Share on other sites

Hmmm, well I guess I should clarify.... I can see where that would be confusing. The phone call was made in the same amount of time it would take to say "I'll be okay" . I redial end my husband, said "elm street target, something is wrong." The phone fell in the floorboard without disconnecting.

I'm exploring other options for my symptoms too.. Seizure, anxiety, MS, etc. Although most of my tests have ruled those out.

Share this post


Link to post
Share on other sites

I'm so sorry that you had to go through that alone except for your son. I do think that you kept it together long enough to dial for help BECAUSE your son was there. Way to go MOM! You're a fighter!  IMHO this is similar (but more extreme) to what Sk8aplexy described in giving his coffee cup awkwardly to the Doctor before collapsing.

You have mentioned the persistent weakness in your legs before and, this time, there was no trigger as there usually is for Cataplexy. A puzzle.

 I really, really hope that you get to the bottom of this soon. I have my fingers crossed for you.

 

Guys, although the majority of my cataplectic episodes have been less than a couple of minutes, I have had some real doozies. A couple at five minutes, one at 15 minutes and the BIG one that lasted a half hour. That last one was caused by a single clap of really loud thunder out of a clear blue sky. My husband came into the kitchen laughing because he had been out cleaning the trunk of the car and the noise had startled him so much that he hit his head on the trunk lid. I was already on the floor and he couldn't get me up for a half hour. 

I'm wondering if female hormones and where you are in the cycle can impact the length and severity of an attack? Another reason to be happy in menopause...I don't ever want to go through that again.

Share this post


Link to post
Share on other sites

http://hkpp.org/what-is-periodic-paralysis

I hope you get some answers and I am glad you are ok- sorry I did not say that sooner.

I googled periodic paralysis and - surprise- there is actually a disease with that name. I just thought I would post it since it has some overlap with what you described. I have found that it is important to describe symptoms accurately. For example, when I did not know I had cataplexy, I told several doctors that I drop things from my hand. I never realized both arms dropped- I only focused on the hand that dropped the object. Sleepy vs tired or fatigued - each means something different but we often use them interchangeably.

So, I mention this so that you can become a master at describing your symptoms accurately. It would have saved me some time if I had done so.

Also, keep a cool head through this. My diagnostic process was long and It drove me a little bonkers. Doctors pick up on that which does not help matters. It is a frustrating process and short term counselling helped me manage it - I decided it was best to pay someone to listen to my frustration rather than make friends do it free. This is a stressful time for you- take good care of yourself.

Share this post


Link to post
Share on other sites

Ferret- you ask if female hormones can impact the severity of an attack- I say YES. They make my cataplexy worse for sure. I have 2 teenage daughters and when the moon is full- and emotions run high- I hold on tight.

Share this post


Link to post
Share on other sites

*BEEP* Hank! You just gave me my first C attack in two months. You play dirty!

 

Nice catch on the Periodic Paralysis. Makes sense to me.

Share this post


Link to post
Share on other sites

squirrel -- as I have said before, and I will repeat this again for Hank's benefit, negative MSLTs DO NOT exclude narcolepsy.  The presence and importance of REMs on an MSLT have recently been called into question.  2 SOREMs and a latency of < 8 min ... SO WHAT?!!  Cataplexy means narcolepsy.  Her MRI is clear -- therefore, the diagnosis can be made clinically.

 

Cataplexy can be typical or atypical.  Cataplexy CAN be spontaneous -- this does not mean it's not cataplexy.  No two narcoleptics are the same.  

Share this post


Link to post
Share on other sites

*BEEP* Hank! You just gave me my first C attack in two months. You play dirty!

 

Nice catch on the Periodic Paralysis. Makes sense to me.

You are terrific. Sorry for tripping you up.

Share this post


Link to post
Share on other sites

squirrel -- as I have said before, and I will repeat this again for Hank's benefit, negative MSLTs DO NOT exclude narcolepsy.  The presence and importance of REMs on an MSLT have recently been called into question.  2 SOREMs and a latency of < 8 min ... SO WHAT?!!  Cataplexy means narcolepsy.  Her MRI is clear -- therefore, the diagnosis can be made clinically.

 

Cataplexy can be typical or atypical.  Cataplexy CAN be spontaneous -- this does not mean it's not cataplexy.  No two narcoleptics are the same.

I defer to your knowledge about cataplexy. I was speaking from my experience.

Share this post


Link to post
Share on other sites

My money's on Hank's experience. Squirrel's persistent leg weakness is very strange and the Periodic Paralysis description makes much more sense of it.

 

Hank, I LOVE a good laugh and I totally understood your despair...one of my granddaughter's is 13...going on 20. ;)

Share this post


Link to post
Share on other sites

You guys have given me lots to think about.

 

I appreciate the thoughts. I do not know what causes the muscle weakness in my legs. I have had many tests... All I do know, is that it is much worse when I am extremely tired. I also have weakness with emotion, especially nervousness, laughter or startled- which I know now could be cataplexy, especially paired with my EDS.

 

right now I am just trying to take it easy, take each day as it comes, and take careful notes of what is happening with my body. Stressing out over it, doesn't help in the least.

 

It's a big puzzle, I wish it was more cut and dry, but we will figure it out eventually.

 

thanks again.

Share this post


Link to post
Share on other sites

Mild partial spontaneous cataplexy is always felt more when the patient is tired.  Numerous attacks can simply go unnoticed at other times when standing up.  Usually, cataplexy in the legs is felt most in the knees.  You will tend to feel it more when lying down on the couch when the pull of gravity is off your legs.  Why not ask for an anti-cataplectic and see if that helps?  Process of elimination ... trial and error.  Worst case the anti-cataplectic would be like a bowl of chicken soup when you have a cold -- it may not help, but it won't hurt.  Adderall does have some anti-cataplectic effects, so you should resume that also.

Share this post


Link to post
Share on other sites

I hope you can use this time and this forum to summarize your symptoms, so you can give an accurate history to your doctors

Firstly, make sure you have chosen a well qualified doc. Make sure he or she is curious. I have found that teaching hospitals are good at this because they are interested in learning new things.

These are my symptoms

This is what happens before, during and after

This is what makes them better and worse

These are the tests I have had

These are the causes considered

This is what I have been eating and any changes

This is when I sleep and wake

These are the medications that have and have not helped

This is when it started and when it became a problem

This is how it affects my life

These are the things it keeps me from doing

This is what other people have noticed and commented on

I hope that summarizing all the facts- just the facts ma'am, will help your doctor tune in to whatever the cause is. The better history you are able to offer, the better your doctors can help you.

Go into your appointment with noted and everything you need to give information.

Share this post


Link to post
Share on other sites

Good Advice there Hank.

 

Squirrel, one thing you might try if you note it occurring again, is to immediately lay down.  Even if, awkward like.  Sprawl out your limbs and simply breathe, try to think of nothing, besides focusing only on breathing, perhaps counting slowly as you breathe. 

This is a strategy that I gradually learned to, fall back on, at the instant or points in time, were I was feeling it coming on.  I've done this on sidewalks, in empty (very important that it doesn't have water, but since I skateboard they must be empty!..) pools, in the grass, on ice, in a grocery store...  I've found my Cataplexy, muscle flickering/weakness/freeze-ness dissipates very quickly (within 10 seconds) and also especially if I do not resist it what so ever.  You don't need to lay down long, perhaps you'll note strength returning, or perhaps not?  There have been times I've layed down and been able to note, that the Cataplexy wouldn't have likely made me collapse, but hey I like to be better off safe, than sorry.

 

I hope you get it figured out promptly and with minimal difficulty, hoops, ringers and/or stress-ors...

Share this post


Link to post
Share on other sites

I had the exact same type of "episode" that you just described, multiple times this past year and it lead me to being diagnosed with narcolepsy. I also was down on the ground, could understand what was going on but could not move, and was in the "episode" for long enough to come out of it in the ER. I also had no discernible trigger that usually accompanies cataplexy. My doctors ended up thinking it was either a form of epilepsy or narcolepsy, although both specialists said it didn't really fit all the way. Took the mslt and was diagnosed as clear cut narcolepsy although my neurologist was very surprised (I didn't think I had any other symptoms such as the extreme sleepiness.) Now I'm on a stimulant and have had no recurrences whatsoever, when they used to happen daily.

 

I just had to comment because although I know little about narcolepsy or cataplexy, I don't think it should necessarily be ruled out in your case. I say although it can be discouraging continue to speak with doctors and specialists about your symptoms and try to take it easy. I really hope you get it all figured out soon!

Share this post


Link to post
Share on other sites

WarmColors,

Did you experience the all day/multiple day leg muscle weakness that Squirrel has commented on in her other posts?

Has anyone else out there experienced it with Cataplexy? (other than having the flu at the same time)

I agree that Cataplexy should stay on the table 'til completely ruled out.

I'm equally sure that we all wish Squirrel the best in getting to the bottom of her health problem...whatever it is.

Share this post


Link to post
Share on other sites

I found Warm Colors post helpful. =)

 

She doesn't have to have ALL of the symptoms that I do to have our situations be similar .I appreciate the response, and yours too. It's all pieces of a puzzle that I am trying to figure out. Some pieces fit, others don't match at all. I'm walking a fine line here between figuring out exactly what is happening, and overanalyzing everything. I'm doing my best!  Many of my posts on here are just thinking out loud, if that makes any sense. I hope this is a safe place to do that. So far you guys have offered some great advice.

 

In response to my weak legs- I spoke to my neuro today at our follow up and she suggested that it is likely a sleep deprivation issue for me along with the possible cataplexy ( that stems from an emotional response) Since the weakness is often on days I am especially tired. Just a theory, again, we are still putting the pieces together.

 

Thank you guys again for giving me things to think about!

Share this post


Link to post
Share on other sites

Ferret,

I haven't read any other posts by squirrel! but according to what you said  no, I had no other symptoms that I ever noticed other than the episode itself.

 

Squirrel!,

I'm glad you found it a little helpful, when I read your post I was very surprised to see someone who has had such a similar experience so it's nice to speak with you. :] 

Share this post


Link to post
Share on other sites

Update: it's been a few months since my original post. I did end up with a NwC diagnosis and the episode I described was rebound cataplexy. ( which explains why there was no trigger) They happened daily, multiple times a day for weeks on end. They started slowing down after about 10 weeks but I still deal with weak legs and twitching. My sleep dr said it could take a year to get back to baseline.

It's been a crazy long few months but the pieces finally came together!

Share this post


Link to post
Share on other sites

Well, welcome to the club.

 

I am so glad for you that you finally got your answers. So, rebound Cataplexy was the smoking gun.

 

Out of curiosity, what were you rebounding from. I know you had mentioned no meds 2 weeks before psg.

 

What medication are you on now and how is it working for you.

 

I hope you are feeling better and relieved to have your mystery solved. Having an atypical presentation of a rare illness certainly put you into a very small group. You must have some very good doctors to have gotten the answer.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now